Home Forums General Discussion New to This Forum, Need Some Guidance

This topic contains 7 replies, has 3 voices, and was last updated by  Red Lizzy 7 months, 1 week ago.

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  • #458875
    Red Lizzy
    Participant

    I was diagnosed Limited Sclero/Sjogren’s/Raynauds last year, put on Plaquenil at that time and things have been quiet, nothing much going. Several months ago I had issues with some breathlessness. MY PCP had Xrays done,nothing much there, so sent me to a Pulmonologist. He sent me for CT scan and it showed ILD. He did nothing and recently sent me back for followup, new ones show and increase, so now is time to do something. He just put me on CellCept, can’t say I really like it, some nasty sides and unsure what it will do, so want to hedge by bets so I checked online and found the AP protocol and this site. I have done some searches here found some mentioning of ILD but none of the posters are still active, which does not bode well. I checked on Inspire since I was having problems logging in on this site and most are against AP, but a few are very knowledgeable and definitely for it and gave me some good advice about finding doctors and basic info on what to use to help out with lots of links,even some doctor info to help out. Now that my membership on this site is set up I am back looking to get even more info from those who have or are dealing with this and how they are doing. Hope someone will chime in with an update and info on the doctor you are seeing. Any info appreciated. Thanks. Liz

    #458884
    Maz
    Keymaster

    Hi RedLizzy,

    You made it on here just fine and hoping you have now also received your AP doc list in addition to the LLMD one.

    Have you seen the SD Research section yet? If not, you might enjoy a browse on this section and studies demonstrating efficacy for both tetracyclines and ciprofloxacin for lung fibrosis.

    Scleroderma Research

    Hope you’ll find a home here and a place to discuss AP with others once you get started on your antibiotic treatment. It can be tricky discussing AP on non-AP focused sites, where misinformation and negativity can be a problem.

    One thing to consider in terms of combining Cellcept and Minocycline (the core antibiotic treatment for SD) is that there is a moderate interaction, whereby minocycline can reduce blood levels of the Cellcept, requiring a dose adjustment. It’s a pretty powerful drug, so unsure if you’d want to do that for the long-haul.

    Drug Interaction Between Cellcept and Minocycline

    There are some natural lung supports that people here have used very successfully for ILD when using minocycline that are largely antioxidative in nature (alpha lipoic acid, for example) and to help clear the lungs of mucous and help reduce fibrosis (systemic enzymes, glutathione IV pushes or anything that promotes glutathione, such as N-AC, an over the counter supplement, as well as curcumin, milk thistle, non-denatured whey protein, etc.).

    It can be a very tricky decision to decide whether or not to combine AP with conventionally-used meds, but most can be used alongside AP without any trouble. Cellcept, on the other hand, may not be as effective.

    See Dr. Trentham’s article that he supplied upon his retirement that talks about combining medications and also the SD section. Dr. Trentham ran the Minocycline in Early Diffuse SD” trial.

    Antibiotic Therapy for Rheumatic Disease: You know where we have been; so where are we now?

    Hope this will help a bit in your searches and decision-making process.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458885
    richie
    Participant

    Cellcept is another in a long line of drugs tried for scleroderma -without any notable success –relaxin cyclosporine and now cellcept –which has a nasty tendency to totally destroy corneas and cause blindness –Limited scleroderma is a misleading term -it is every bit as nasty as diffuse scleroderma –InternaL PROBLEMS CAN STILL BE THE SAME –LIMITED DOESNT HAVE SKIN INVOLVEMENT –THATS THE ONLY DIFFERENCE -I am a great believer in mixing traditional meds with an antibiotic protocol –my personal experiences bear this out –While it is accurate to say over time fibrosis can be helped with an antibiotic protocol -traditional meds such as tracleer and others which specifically treat ILD can be useful –My successful approach was the antibiotic treats the overall disease which is considered a collagen vascular disease -and other traditional drugs treat all the symptoms such as Raynauds -fibrosis etc

    #458887
    Red Lizzy
    Participant

    HI Maz,

    Thank you very much for the information provided on CC and antibiotics. I ran across his early on, seemed very odd, even probiotics have this effect on CC also. Seems CC depends on our gut biome to regulate the immune system, same it it would naturally so if not dysbiotic. If it were not for the lung involvement which makes things very tricky I would chance it and use a number of the newest specialized strains ie L reteuri 17938. this strain will actually initiate the actions of the Treg cells to release IL-10 and in this case IL-1, IL-2 and IL-13 to bring the immune system back under control, and added plus is it is a human strain which means it will colonize and given time will permanently take residence unless killed off by antibiotics like it probabably was the first time around. I had spent a good amount of time research the gut biome and was hoping to either have a fecal transplant or use probiotics to bring things under control when the lung issues started and messed up my plans. Now that I have the LLMD and AP list I can contact a provider that was highly recommended to me by a knowledgeable person with the same issues and who is doing well, plus by many others on the RB forum. hopefully in conjunction with CC at least in the beginning we will get things in order again. I plan to update my progress over time as needed and take advantage of the knowledge and support of this forum and maybe make some good friends in the process. I will be around to stay, so looking forward to many posts here over time. Will be updating with some recent experiments I recently tried,but it is late here and totally dead, until tomorrow. Liz

    #458888
    Red Lizzy
    Participant

    Cellcept is another in a long line of drugs tried for scleroderma -without any notable success –relaxin cyclosporine and now cellcept –which has a nasty tendency to totally destroy corneas and cause blindness –Limited scleroderma is a misleading term -it is every bit as nasty as diffuse scleroderma –InternaL PROBLEMS CAN STILL BE THE SAME –LIMITED DOESNT HAVE SKIN INVOLVEMENT –THATS THE ONLY DIFFERENCE -I am a great believer in mixing traditional meds with an antibiotic protocol –my personal experiences bear this out –While it is accurate to say over time fibrosis can be helped with an antibiotic protocol -traditional meds such as tracleer and others which specifically treat ILD can be useful –My successful approach was the antibiotic treats the overall disease which is considered a collagen vascular disease -and other traditional drugs treat all the symptoms such as Raynauds -fibrosis etc

    HI Richie,

    I am totally beat right now, but will respond to you tomorrow as I have some questions since you appear very knowledgeable in Scleroderma. till then! Liz

    #458910
    Red Lizzy
    Participant

    Cellcept is another in a long line of drugs tried for scleroderma -without any notable success –relaxin cyclosporine and now cellcept –which has a nasty tendency to totally destroy corneas and cause blindness –Limited scleroderma is a misleading term -it is every bit as nasty as diffuse scleroderma –InternaL PROBLEMS CAN STILL BE THE SAME –LIMITED DOESNT HAVE SKIN INVOLVEMENT –THATS THE ONLY DIFFERENCE -I am a great believer in mixing traditional meds with an antibiotic protocol –my personal experiences bear this out –While it is accurate to say over time fibrosis can be helped with an antibiotic protocol -traditional meds such as tracleer and others which specifically treat ILD can be useful –My successful approach was the antibiotic treats the overall disease which is considered a collagen vascular disease -and other traditional drugs treat all the symptoms such as Raynauds -fibrosis etc

    Hi Richie,

    You are probably right with CellCept not being too effective against Scleroderma from what I have seen but in the case of Pulmonary issues it is much better viewed. From what I have seen, a clinical trial run by National Jewish in Colorado it was as effective as anything else tested against ILD in preventing further progression with some possible regression of certain parameters, while not being too hard on the patients with excessive drop outs, and from speaking to several patients that tried it, their testimony seems to bear this out. So far I am limiting my dose to 500mg total daily, well below the 2-3 grams normally advocated. I did try going double this amount and it actually made a nice difference in how I felt and blood work was unchanged with no additional side effects, but I am looking to hold it to a minimum and hope the AP will do the work when it kicks in so I can drop it lower or totally out of the picture. I took a look at the other drug you mentioned, Tracleer, but that drugs Hepatotoxicity makes Cellcept look like gumdrops from the side effect profile, have you used it? Did you have any form of lung involvement at any point of disease progression? If so what did you use and what were the results. If you had an lung issues did you ever try high dose NAC, at least 4800mg daily for several months as it seems to work on the Mtor pathway similar to Rapamycin, which more than likely is the key to Scleroderma and was recently proven by a small trial in non responsive Lupus. NAC was shown to be very effective in a similar Lupus trial also at the above mentioned doses. Any info you can provide either through experience or anectdotal knowledge of any drug and its effect on ILD or PF would be very much appreciated. Best, Liz.

    #458912
    richie
    Participant

    Hi While I had many many problems with my diffuse scleroderma -lung involvement was not one of them –never had any sort of lung involvement –I assume the antibiotic had something to do with this –slowing then halting the progression then reversing the many problems along with help from tradition meds such as calcium channel blocker ,ppi, and cozaar to hopefully prevent kidney problems ,I had major skin tightening ,contractures ,tendon involvement and other things but no lung involvement .

    #458920
    Red Lizzy
    Participant

    Hi While I had many many problems with my diffuse scleroderma -lung involvement was not one of them –never had any sort of lung involvement –I assume the antibiotic had something to do with this –slowing then halting the progression then reversing the many problems along with help from tradition meds such as calcium channel blocker ,ppi, and cozaar to hopefully prevent kidney problems ,I had major skin tightening ,contractures ,tendon involvement and other things but no lung involvement .

    Richie,

    Looks like you lucked out in that respect, though I am sure you have plenty other issues to contend with. I have been having a problem finding anyone on this forum who has treated Lung involvement, are you familiar with anyone here who did and used AP to treat? Thanks. Liz

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